Why Having Another Seizure Scared Me So Much

A week ago today I had a seizure. The first seizure I’ve had in nine months and it scared the hell out of me.

Those of you who know me may be wondering why it scared me so much. I mean it definitely wasn’t the first time. Well, I think it scared me so much because it came out of nowhere. Those unchallenged by epilepsy can’t know the fear that comes with waking up and not knowing where you are or what happened to you. Not knowing how much time you’ve lost track of, or whether  you’ve lost control of your bladder in front of strangers. How hard it is to lay there with an audience staring at you, watching you at your most vulnerable time. Fear that your mom or your man, the people who know your illness best won’t make it to you in time. The terror at seeing the chaos your seizure caused. The thought of the judgment you can tell people are giving you. The embarrassment of what you consider to be your  fate in the hands of someone else because you can’t communicate for yourself. Not wanting to tell anyone you had yet another seizure because you don’t want to hear them say “What? Again?” It sucks. And let me tell you, it’s humbling.

Other relevant stories:
• Medications for Epilepsy
• Things You Can’t Do with Epilepsy
• Is Epilepsy an Autoimmune Disease 

I think another reason this time scared me so much is because I’ve felt so much better lately. And then boom, hanging out with a friend I fall out and have not one but two seizures in the middle of her business. When you have epilepsy, you learn to explain your condition to new people in your life, but it often doesn’t mean much until they experience it with you. It’s that way with employers as well. At an interview, do you tell them that at any time you can start convulsing and interrupt a normal productive work day at their establishment, oh and after that you’ll be out of commission for Lord knows how long?

Having epilepsy can leave you with impossible decisions to make and living in fear of when the next one is coming. But every day I’m choosing to not live in fear, to not be afraid of what I carry with me all the time. Despite how people sometimes react, I try to prepare everyone I’m around anyway. We can’t be ashamed of something we can’t change about ourselves. I have to constantly remind myself that yes it will happen again, it may be tomorrow or it may be in two years but I’m going to enjoy what I can while I can. I push that fear to the smallest place in my mind and I endure.

If you know someone with epilepsy, learn what their triggers are and what their needs may be in the event of a seizure. Also learn as much as you can about their illness so you’re more prepared to help them. My friend listened to me and was able to get me help when I needed it most. Don’t be afraid to tell any and everyone about what your needs are and what they need to do to help you should you need it. Honestly, what other choice do we have? Not telling them could mean life or death for you, and no form of embarrassment is worth that.

After a week of resting, I’m starting to feel like myself again. I just have to keep working now to put that fear to bed.